Petition: That the ME Association leave the CMRC

[Daisymay]

Charles I really wish you would answer my genuine questions please

1.why is the situation different for MEA than ME research UK?

2. How long has CMRC existed and what have they achieved for the severely ill?

Thanks.

What have they achieved for anyone with ME?

 

[emmaj]

Charles no one is denying the good MEA do in other areas, but continuing to ignore my questions shows to me that
1.they can't be answered because you don't know (seems unlikely but fair enough just say so)
2.you can answer them but you won't (which is rude)
3.you can answer them but won't because the answers don't help your position. - (politicians tactic)

I think they are reasonable questions that deserve an answer if not from you personally then from the MEA. I'm just trying to understand the MEA's position on this beause at the moment I really don't.

 

[BurnA]

If I was on the board of an HIV and AIDS charity and I found that some - or even all - of my fellow board members were AIDS denialists, I would have to think long and hard before I tendered my resignation.

If I was on the board of a charity and found out they were a front for funding terrorism I would not hang around thinking twice, debating the pros and cons, I would you get off that board as soon as I could and report them to the police.

I don't think anyone would be thinking twice, because you don't want to be asscoiated with wrong doing, and if you don't expose them you are legitimising their fraud.

Esther Crawley is doing wrong, the CMRC endorses her work, it's time to get off the board and expose them.

If it's wrong, its wrong.

Its not about giving an organisation the chance of doing more wrong if you weren't involved, that sounds suspiciously like something Donald Trump might say.

It's easy to resign and walk away saying "I don't support this". It's much harder to grit your teeth and stay in the room, knowing that eventually you'll lose the coming argument and you'll have to walk away anyway

Actually I think it's always easier to do nothing.
Its very hard to leave the room because you made a conscious choice to enter the room believing you could make a difference, and by leaving the room you are giving up that hope. That's the problem here, people are clinging on to hope in the absence of any logical reason.

Leaving the room is a sign it didn't work out, and it takes a lot to admit that.



For the record I support the MEA in everything they do with the exception of their membership of the CMRC.

 

[A.B.]

For the record I support the MEA in everything they do with the exception of their membership of the CMRC.

Same.

 

[Undisclosed]

OK - it is very clear that some people on PR don't like the type of carefully thought through and constructive (rather than shouting) advocacy and campaigning that myself and the MEA am involved with - but someone has to do it

The MEA has been the only charity to organise a petition calling on NICE to overrule their experts on the ME/CFS guideline review - with nearly 9000 signatures being collected so far in just four days

What is patently clear is that some members who are patients do not like that the MEA is a member of the CMRC.

I have seen some very carefully thought through and constructive comments related to this issue and some not so nice comments too. This is a forum where members voice their opinions in all sorts of way. A forum is for speaking one's mind. Some are just too sick and fed up to play nice. I think honesty is a good thing. It's not just advocacy and campaigning, it's about personal things that people care deeply about and want to voice.

We are not going to tell members not to rant when they are angry. We don't allow personal attacks. Other than that, members are free to speak in any fashion they want -- angry, calm, whatever. If people are angry and voicing that, it means something, doesn't it?

Alluding to members as 'shouting' or not doing constructive advocacy and campaigning is not adding to a constructive conversation either. I was hoping that this thread could be a constructive conversation about why members do or don't support the MEA being a member of the CMRC. Can we not have this conversation? Can you not dismiss this outright which makes people angrier. It doesn't seem so. I, personally, think that some of the comments you have made haven't been on the constructive positive side of things either.

@charles shepherd Would the MEA run a poll of it's members to see what they think -- if the members of a charity who pay to support that charity voice the opinion to resign from the CMRC -- would you -- or is it that you aren't going to listen to your membership.

The petition about the NICE guidelines is a whole other kettle of fish. The petition is good but nothing to do with the MEA's membership with the CMRC. Many take the membership as a sell-out, supporting BPS research. I think all they want is for the MEA to make a very clear statement that they do not and will not support damaging BPS research led by the likes of Crawley. Not too much to ask. Is it?

I also agree that the MEA has done some great things.

 

[Stewart]

Don't take my word for it. Peter Tatchell who has 50+ advocacy experience has said that any gains from 'inside the tent' in his experience have been very few and far between. Most movement in any social justice issue has come from without and from civil disobedience.

Thanks for the link Snowdrop, but I don't need to read the summary of Peter Tatchell's presentation because I've actually worked with him (although I doubt he'd remember - it was over a decade ago now). And I know from that experience that he's quite ready to work inside the system - even on occasion with people he disagrees with - if he thinks that's the best way to achieve his advocacy goals.

I totally agree with the point that you're unlikely to make gains from inside the tent. But my experience is that you're also unlikely to make gains if you say to people "We don't want a seat at the table thanks - we'd rather shout at you from outside." I can understand people are frustrated that MEA doesn't seem to be adequately conveying their anger to people in a position to make a difference - what I don't understand is why those people don't express that anger themselves to the people in authority, rather than continually demanding someone else do it on their behalf.

The ideal situation is to have people both outside and inside the tent - outside to apply the pressure for change, and inside to explain to the people in authority how to best address the concerns of the angry voices outside. At present we have the latter but the not former. If instead we had the former but not the latter - which seems to be what some people here would like - I don't personally think we'd be any further forward. Instead of criticising the MEA for being an insider rather than an outsider, how about people start a new 'outsider' network - and leave the MEA to perform the role it's spent decades building up expertise in?

 

[Stewart]

Esther Crawley is doing wrong, the CMRC endorses her work, it's time to get off the board and expose them.

This is the bit of your argument I have a problem with. You make it sound so straightforward - the MEA gets off the board, and then we 'expose them'. Simples. Except - and possibly no-one else has noticed this - we've been trying to 'expose them' for literally decades. It hasn't worked in the past and it's unclear to me why anyone thinks it will suddenly work now.

The argument seems to be that if the MEA leaves, then somehow - by some unspecified means - the CMRC will implode. I suspect a more likely reality is that the MEA leaves and then a much more unified CMRC gets its act together and finds the funding to go ahead with MEGA - and then we're all back in PACE territory. And as I remember it, once PACE got the go ahead we were unable to influence the progression of that crappy trial in any way and we're still stuck with its effects years later.

I'd rather the MEA stayed on the board and continued to act as an irritant, holding MEGA up even if they can't stop it forever. Besides - why does the MEA have to leave before we can 'expose them'? If it's that straight forward, let's just 'expose them' now while the MEA is still a member. I'm sure they can live with the embarrassment.

 

[Skycloud]

@Stewart - Good posts!

The ideal situation is to have people both outside and inside the tent - outside to apply the pressure for change, and inside to explain to the people in authority how to best address the concerns of the angry voices outside. At present we have the latter but the not former. If instead we had the former but not the latter - which seems to be what some people here would like - I don't personally think we'd be any further forward. Instead of criticising the MEA for being an insider rather than an outsider, how about people start a new 'outsider' network - and leave the MEA to perform the role it's spent decades building up expertise in?

I'd rather the MEA stayed on the board and continued to act as an irritant, holding MEGA up even if they can't stop it forever. Besides - why does the MEA have to leave before we can 'expose them'? If it's that straight forward, let's just 'expose them' now while the MEA is still a member. I'm sure they can live with the embarrassment.

You've clarified my thinking, thanks

 

[arewenearlythereyet]

what I don't understand is why those people don't express that anger themselves to the people in authority, rather than continually demanding someone else do it on their behalf.

Well this is the main point. The reason why people are getting frustrated is because the MEA is a charity funded by people's donations. Members pay their donations in good faith to represent them and protect their interests from the medical professionals and politicians who think they are permitted to make decisions about people's lives without due consultation, accountability or taking time to understand the issues.

Charles is being asked to confirm how the MEA has interpreted the wishes of members of the MEA on this one issue. This is a reasonable request that still hasn't been answered despite many people politely asking the same question on this thread and others.

So far he hasn't answered this reasonable question but instead changed the subject to personal attacks or other subjects. Hopefully he will reflect upon it and answer the question regarding representation. But this is his choice. A lack of response is also suggestive so it really is his decision.

I don't think it's easy for all people with ME to set up their own group given the condition. They rely on the charities to represent them. I don't think it's unreasonable to ask for proper representation given these circumstances.

Having said all of this I think Charles does a great job for MEA members and I think these difficult conversations can obviously be draining all round for everyone so I don't think we should expect immediate responses all of the time. It must seem like a thankless task at times so I think we should give him a bit of a break given what's been going on this week.

Sometimes though direct questions deserve direct answers even if this is unpalletable for some.

 

[emmaj]

-"what I don't understand is why those people don't express that anger themselves to the people in authority, rather than continually demanding someone else do it on their behalf"

Believe me I am (happy to show you my fat file of letters - I've just had a meeting with a facetious physio at the Sutton NHS clinic this morning). If more people did I think we'd get somewhere. It isn't only Charles busting a gut on this.

I don't think anyone is under the illusion the CMRC will fall apart if MEA leaves but it will make it weaker and MEA's position on BPS and it's supporters clear which it totally isn't being a member. I think that's crucial for the government et al to see.

 

[Snowdrop]

The ideal situation is to have people both outside and inside the tent - outside to apply the pressure for change, and inside to explain to the people in authority how to best address the concerns of the angry voices outside.

I am beginning to feel that this is a conversation that will go in circles. The CMRC know what their agenda is and it is not patient friendly. They are very well aware of what we think. I am flabergasted that you say we have not said so directly through comments on articles and through social media. WE are finished with telling them for decades. There is really nothing left to be said. There is no way even to imagine change from them. They are completely invested -- their reputation, their financial status, their whole circle of colleagues and friends their lives are tied to promoting what is inherently bad for patients.

Tell me what kind of change do you imagine happening here?

Also, the inside/outside tent thing is a theoretical construct for which I could care less. What matters is the practical. What in the real world works.

PT did say he has both inside and outside -- the point being that this is how he had the ability to opine that inside did not work very well. It's called a learning curve.

ETA: I completely missed your last point. I have no idea where you are coming from with this statement. What do you suppose David Tuller has been doing? Just to scratch the surface of that angle of advocacy.

 

[Snowdrop]

Arewenearlythereyet also makes a good point. We have ME. I don't know what your functioning is like but many people have been trying for decades to tell those in authority and many of us are extremely ill. That is what advocacy groups are for, no?

The people who we are trying in vain to tell are also powerful and have had the run of media attention the SMC at their beck and call to spread disinformation. These are the same people behind the CMRC. I just honestly can't fathom your thinking as someone who wants medical science to move forward for a treatment/cure for us.

It's not like this issue just happened along yesterday.

 

[BurnA]

This is the bit of your argument I have a problem with. You make it sound so straightforward - the MEA gets off the board, and then we 'expose them'. Simples. Except - and possibly no-one else has noticed this - we've been trying to 'expose them' for literally decades. It hasn't worked in the past and it's unclear to me why anyone thinks it will suddenly work now.

I don't think it will suddenly happen, they will be exposed by their inbred isolation from the rest of the scientific world. A bunch of "researchers" researching a disease with no charity backing would raise a lot more eyebrows than the same questionable researchers arm in arm with charities.

It's not an overnight process and frankly if it takes a long time it doesn't matter, the point is - it will take longer with the MEA in bed beside them.

The patient community has long been trying to expose them, it hasn't been easy but I would argue it is happening now, have you been following the journal of health psychology editorials? They are the result of patients' efforts and you might have noticed that the PACE authors are not too happy.


As far as I know the MEA supports MEGA so not sure about that argument.

 

[Binkie4]

@Stewart

- what I don't understand is why those people don't express that anger themselves to the people in authority, rather than continually demanding someone else do it on their behalf

How do you know this isn't happening?
I suspect you owe a lot of people on this forum an apology.
In the last couple of days I have seen people describe writing to Lipkin, Holgate and many others.
Our own files are thick with correspondence with various bodies and institutions.
Why would you think individuals aren't writing?

 

[Stewart]

{cracks knuckles}

I don't think anyone is under the illusion the CMRC will fall apart if MEA leaves but it will make it weaker and

That right there is the point where you lose me. People keep saying - or implying - that the CMRC will be weakened, and I really don't understand where that notion comes from. If the MEA leaves the CMRC they're more likely to break open the champagne than break down in tears. The MEA is the main (only?) real voice of opposition to Crawley in the CMRC right now. If the MEA leaves they'll be more unified and they'll still have patient representation in the form of Esther's helpful house-trained pets, AfME. They don't need anyone else to give the illusion that the patient voice is still adequately represented - that's a set-up that's worked for them before.

ITell me what kind of change do you imagine happening here?

I don't think you've followed my argument at all. I *don't* expect them to change - at all, in any way. That's precisely why I don't want the other CMRC members left alone, continuing to develop and seek funding for MEGA with only AfME supposedly representing patients' views. Because I think we all know how that'll work out. I don't want the MEA to leave until I know MEGA is dead dead dead and the CMRC is nothing but a shattered husk (by which point there'll be nothing to leave...)

From where *I'm* sitting *your* plan seems to be to withdraw from the CMRC, allowing them a clear uninterrupted shot at getting MEGA off the ground, then scream powerlessly at them as more funding is wasted and more poor research is produced - because they've paid no attention to patient protests in the past, as you freely admit. Can you see why I might think that plan needs a bit of refining?

Charles is being asked to confirm how the MEA has interpreted the wishes of members of the MEA on this one issue. This is a reasonable request that still hasn't been answered despite many people politely asking the same question on this thread and others.

Except that the MEA is not - and to the best of my knowledge has never been - a direct democracy. They may hold regular surveys to assess members' opinions on a range of topics, but from what I can see their board of trustees is under no obligation to specifically consult their membership on this, or any other, specific issue. So saying (as Charles did at the start of this thread) "We regularly review our membership of the CMRC, taking into account the feedback we're receiving from our members" is actually a perfectly reasonable (if obviously quite unpopular round these parts) reply. An MP - an elected official, like the trustees - isn't expected to survey his/her entire constituency before deciding how to vote in Parliament on an issue - but you'd expect them to pay attention to the views that they're receiving in their postbag.

(I can appreciate that some people here might want the MEA to be more democratic, but personally after last year's referendum and the US Presidential election my enthusiasm for increased democracy - direct or otherwise - is lacking right now)

I don't think it's easy for all people with ME to set up their own group given the condition. They rely on the charities to represent them. I don't think it's unreasonable to ask for proper representation given these circumstances.

Arewenearlythereyet also makes a good point. We have ME. I don't know what your functioning is like but many people have been trying for decades to tell those in authority and many of us are extremely ill. That is what advocacy groups are for, no?

Why would you think individuals aren't writing?

I wasn't trying to suggest that people set up their own group. I was just that making the point instead of having prolongued conversations like this, a better use of time and energy might be emailing MPs - MEPs - Councillors - NHS Trusts - Clinical Commissioning Groups (I could go on...) and instead using PR as a forum where we co-ordinate our efforts. If you're capable of using a keyboard (part of the time, at least) and you don't feel a particular charity is doing a good job of expressing your anger to people in power, there's literally nothing stopping you from expressing it directly yourself, rather than indirectly here.

And I wasn't suggesting that people weren't writing already. But this - this conversation we're having right now - has ran to over a hundred posts so far. Do you really think there's nothing more productive that we could have done with all that time and energy than criticise and argue amongst ourselves?

A bunch of "researchers" researching a disease with no charity backing would raise a lot more eyebrows than the same questionable researchers arm in arm with charities.

It's not an overnight process and frankly if it takes a long time it doesn't matter, the point is - it will take longer with the MEA in bed beside them.

As far as I know the MEA supports MEGA so not sure about that argument.

I don't understand how or why the MEA's departure - or non-departure - would have that effect. As I've said above, the CMRC already has another patient charity involved - good old AfME - who would presumably hang around even if the MEA left. So even if the MEA departs the 'questionable researchers' will still be able to give the impression of remaining 'arm in arm' with charities - so no eyebrows will be raised and we'll be no further forward than we are now in terms of tearing down their credibility.

And as far as I'm aware the MEA has not to date expressed support for MEGA. I think they said they wouldn't make a decision until the trial design was finalised.

Having said all of this I think Charles does a great job for MEA members and I think these difficult conversations can obviously be draining all round for everyone so I don't think we should expect immediate responses all of the time. It must seem like a thankless task at times so I think we should give him a bit of a break given what's been going on this week..

I couldn't agree with this sentiment more, and you've expressed it far more sensitively that I would.

Given that we're in the middle of the two week NICE response window I'm stunned that so many people obviously feel that this is an appropriate time to raise the CMRC issue for the umpteenth occasion. Has anything been said in this thread so far that is so time sensitive that it couldn't wait until the consultation closes next week to be expressed? Could we perhaps just drop this for the next 8 days so Charles - and the rest of the MEA board - can fully focus on making the strongest case for a guideline review?

I know that's not how the internet works, and that I'm almost certainly pissing into the wind here, but... pretty please? We show some enlightened self-interest here and pick this discussion up again a week on Saturday?

(And with that... I'm done for the night, and probably the next few days. I'm sure people will have loads to say in response, but I'm afraid I probably won't be here to read it - I thought it best to make that clear now before people start typing their replies. This has taken many, many more spoons that I expected it to when I started typing. It's flipping tiring work trying to have a dialogue with so many people at once - I don't know how Charles manages to do it on a regular basis...)

 

[emmaj]

{cracks knuckles}



That right there is the point where you lose me. People keep saying - or implying - that the CMRC will be weakened, and I really don't understand where that notion comes from. If the MEA leaves the CMRC they're more likely to break open the champagne than break down in tears. The MEA is the main (only?) real voice of opposition to Crawley in the CMRC right now. If the MEA leaves they'll be more unified and they'll still have patient representation in the form of Esther's helpful house-trained pets, AfME. They don't need anyone else to give the illusion that the patient voice is still adequately represented - that's a set-up that's worked for them before.




I don't think you've followed my argument at all. I *don't* expect them to change - at all, in any way. That's precisely why I don't want the other CMRC members left alone, continuing to develop and seek funding for MEGA with only AfME supposedly representing patients' views. Because I think we all know how that'll work out. I don't want the MEA to leave until I know MEGA is dead dead dead and the CMRC is nothing but a shattered husk (by which point there'll be nothing to leave...)

From where *I'm* sitting *your* plan seems to be to withdraw from the CMRC, allowing them a clear uninterrupted shot at getting MEGA off the ground, then scream powerlessly at them as more funding is wasted and more poor research is produced - because they've paid no attention to patient protests in the past, as you freely admit. Can you see why I might think that plan needs a bit of refining?




Except that the MEA is not - and to the best of my knowledge has never been - a direct democracy. They may hold regular surveys to assess members' opinions on a range of topics, but from what I can see their board of trustees is under no obligation to specifically consult their membership on this, or any other, specific issue. So saying (as Charles did at the start of this thread) "We regularly review our membership of the CMRC, taking into account the feedback we're receiving from our members" is actually a perfectly reasonable (if obviously quite unpopular round these parts) reply. An MP - an elected official, like the trustees - isn't expected to survey his/her entire constituency before deciding how to vote in Parliament on an issue - but you'd expect them to pay attention to the views that they're receiving in their postbag.

(I can appreciate that some people here might want the MEA to be more democratic, but personally after last year's referendum and the US Presidential election my enthusiasm for increased democracy - direct or otherwise - is lacking right now)








I wasn't trying to suggest that people set up their own group. I was just that making the point instead of having prolongued conversations like this, a better use of time and energy might be emailing MPs - MEPs - Councillors - NHS Trusts - Clinical Commissioning Groups (I could go on...) and instead using PR as a forum where we co-ordinate our efforts. If you're capable of using a keyboard (part of the time, at least) and you don't feel a particular charity is doing a good job of expressing your anger to people in power, there's literally nothing stopping you from expressing it directly yourself, rather than indirectly here.

And I wasn't suggesting that people weren't writing already. But this - this conversation we're having right now - has ran to over a hundred posts so far. Do you really think there's nothing more productive that we could have done with all that time and energy than criticise and argue amongst ourselves?




I don't understand how or why the MEA's departure - or non-departure - would have that effect. As I've said above, the CMRC already has another patient charity involved - good old AfME - who would presumably hang around even if the MEA left. So even if the MEA departs the 'questionable researchers' will still be able to give the impression of remaining 'arm in arm' with charities - so no eyebrows will be raised and we'll be no further forward than we are now in terms of tearing down their credibility.

And as far as I'm aware the MEA has not to date expressed support for MEGA. I think they said they wouldn't make a decision until the trial design was finalised.




I couldn't agree with this sentiment more, and you've expressed it far more sensitively that I would.

Given that we're in the middle of the two week NICE response window I'm stunned that so many people obviously feel that this is an appropriate time to raise the CMRC issue for the umpteenth occasion. Has anything been said in this thread so far that is so time sensitive that it couldn't wait until the consultation closes next week to be expressed? Could we perhaps just drop this for the next 8 days so Charles - and the rest of the MEA board - can fully focus on making the strongest case for a guideline review?

I know that's not how the internet works, and that I'm almost certainly pissing into the wind here, but... pretty please? We show some enlightened self-interest here and pick this discussion up again a week on Saturday?

(And with that... I'm done for the night, and probably the next few days. I'm sure people will have loads to say in response, but I'm afraid I probably won't be here to read it - I thought it best to make that clear now before people start typing their replies. This has taken many, many more spoons that I expected it to when I started typing. It's flipping tiring work trying to have a dialogue with so many people at once - I don't know how Charles manages to do it on a regular basis...)

To make it clear my petition was in response to Charles refusing to answer my questions on Facebook and saying that he had not received any letters from patients to suggest leaving the CMRC which is actually untrue and he should check his correspondence. He was implying that there was no appetite from the patient community that the MEA should leave and I think this thread and the fact that a fare few have signed the petition proves otherwise, whether you or Charles like that is another matter.

I reiterate I have spent the last 18months or more meeting with my mp and others so please stop telling me how to use my time.

I think the opposing MEGA petition has done more for damaging the CMRC's plan than anything else so you may like to consider that.

 

[emmaj]

Ps there's no need to crack your knuckles. I'm just trying to understand MEA position which so far doesn't make sense.

 

[aimossy]

A talk by Peter Tatchell someone sent to me I found very interesting, if anyone else may be keen to see.
'How to make change happen for human rights - Westminster University, 9 March 2017'

 

[Stewart]

I know I said I was gone... but I really meant to respond to one of emmaj's posts as well last night, but ran out of energy mid-rant. So a couple of words then I really am out of here.

Ps there's no need to crack your knuckles. I'm just trying to understand MEA position which so far doesn't make sense.

There's a pretty common recurring trope - in TV, films, literature - where someone sits down at a keyboard to write a lengthy report - article - piece of code - and cracks their knuckles before they get started.

To make it clear my petition was in response to Charles refusing to answer my questions on Facebook and saying that he had not received any letters from patients to suggest leaving the CMRC which is actually untrue and he should check his correspondence. He was implying that there was no appetite from the patient community that the MEA should leave and I think this thread and the fact that a fare few have signed the petition proves otherwise, whether you or Charles like that is another matter.

I wasn't complaining about your *reasons* for starting the petition, I was complaining about the *timing*. If you were *deliberately* trying to start it at a worse time you'd struggle to find one. Why would you - or anyone else for that matter - create such an unnecessary distraction for the MEA during this fortnight, given that there is nothing in the petition - or in the entire discussion surrounding this issue - that can't wait until the NICE consultation closes? Why would you then additionally keep demanding Charles answers your questions - as you have done in this thread - when you *know* he has something more important to be concentrating on right now?

I reiterate I have spent the last 18months or more meeting with my mp and others so please stop telling me how to use my time.

I'll stop 'telling you how to use your time' if you'll stop telling Charles how he should be using his time (namely to answer you rather than work on the MEA's response to the NICE consultation). Just eight short days, and then you can resume your demands - deal?

I think the opposing MEGA petition has done more for damaging the CMRC's plan than anything else so you may like to consider that.

Well, it's great that you *think* that, but do you have any evidence at all to support that conclusion? If so, would you care to share it? If I had reason to believe that the power of the mighty OMEGA petition (of which I'm a signatory) is so great that it will *definitely* stop MEGA in it's tracks, I might well feel more relaxed about the MEA leaving.

Personally, I'm unaware of any evidence that the Wellcome Trust took OMEGA's existence into account when they rejected the funding application, but I know (because they'd held observer status at the CMRC for quite some time) that they were acutely aware of the internal tensions between the CMRC members - tensions that jeopardise the progress of MEGA, and that would dissolve away if the MEA resigned from the CMRC.

That's it. I'm almost done. Have a nice weekend everyone. But please, for all our sakes, can we just let Charles and the MEA get on with responding the NICE consultation until the end of next week?

 

[lilpink]

it will take longer with the MEA in bed beside them.

... do you mean 'canoodling'?